When an infant or young child is diagnosed with a disability, the family's lives are changed forever. Confronting and living with the challenges brought about by disability requires families to draw upon strengths within themselves that they often did not think existed.
Services for children with disabilities are now mandated from birth to 21 under the Individuals with Disabilities Education Act (IDEA). IDEA requires that families be involved with the planning, development and implementation of services throughout a child's life.
For infants and toddlers, IDEA requires that a state-designated agency (varying from state to state, e.g., Department of Health, Department of Education). This agency is responsible, along with the family and other relevant professionals, for the development of an Individualized Family Services Plan (IFSP). The services specified in this plan most be provided in the child's natural environment. A natural environment is defined as the home and community setting in which children without disabilities participate. This would include childcare centers.
Starting at age three, Individualized Education Programs (IEP) are developed for children who previously had an IFSP. The transition from the IFSP (infants and toddlers) to the IEP should involve all individuals who were and will be involved in the child's new program.
The IEP focuses on long term goals and objectives for educating the child. Children with disabilities (including infants and toddlers) are entitled to receive special education and related services based on their individual needs, which are determined by an assessment and evaluation. A multidisciplinary team, including the child's parents, develops the IEP. If a child needs a related service (e.g., occupational therapy, language therapy) to receive a free appropriate public education, it must be provided at no cost to the parents. Each state has at least one federally funded Parent Training and Information Center (PTI). These centers are designed to provide information and training to parents concerning their child's right to a free appropriate public education. For more information on the law, check the FAPE Web site.
Because the goal of education is to prepare a child for a productive adult life, IDEA requires that, at age 14, parents and school personnel begin considering and implementing a course of study that focuses on life after high school. At age 16, a school is required, with parent and student input, to develop a Individualized Transition Plan as part of the IEP. All state agencies who will be providing services to the student after high school are required by IDEA to be involved in the planning process.
IDEA is a law that offers opportunities for children with disabilities to become productive members of society. However, it involves a great deal of work by all parties (e.g., parents, teachers, related services providers, administrators). Parents must be committed to becoming educated about the law and how to make it work. The resources are available to do that.